When and how to discuss about palliative care and advance care planning with cancer patients: A mixed-methods study

Fulvio Bergamo Trevizan, Carlos Eduardo Paiva, Laura Fiacadori De Almeida, Marco Antonio De Oliveira, Eduardo Bruera, Bianca Sakamoto Ribeiro Paiva

Research output: Contribution to journalArticlepeer-review

Abstract

Objectives To identify the patients who are most likely to participate in discussions about palliative care (PC) and advance care planning (ACP), and to determine their preferred timing and approach of discussion. Methods The study included women aged 18-75 years diagnosed with breast cancer. In the quantitative phase, sociodemographic and clinical characteristics, knowledge, decision-making, and stigmas were evaluated. The qualitative phase included questions about patients' understanding, timing, and method of discussing PC and ACP, which were analyzed by Bardin's content analysis. Results In Phase 1, a total of 115 participants were included, with 53.04% completing both phases and 46.96% declining further participation. Those who completed both phases exhibited higher rates of marriage and educational attainment, while those who declined Phase 2 had a higher prevalence of advanced-stage cancer and palliative treatment. Completion of both phases was associated with a greater knowledge of reality and increased awareness of PC and ACP. Furthermore, the qualitative analysis revealed 5 convergent themes: timing, demystification, patient empowerment, misconception elimination, and open communication. These themes informed the development of a conceptual model that provides a framework for discussing PC and ACP with patients at different stages of cancer diagnosis and treatment, highlighting appropriate and inappropriate approaches and timing. Significance of results Early discussion is beneficial, but withholding information or infringing on autonomy should be avoided. The study reveals that married and highly educated individuals tend to be more receptive to these discussions. However, patients with late-stage cancer tend to decline participation. Patients value open communication, demystification of PC, and empowering discussions that eliminate misunderstandings. Efforts should be made to reach patients with limited familiarity, particularly those with late-stage cancer, to increase their receptiveness to enable well-informed decision-making.

Original languageEnglish (US)
JournalPalliative and Supportive Care
DOIs
StateAccepted/In press - 2023

Keywords

  • Advance care planning
  • Decision-making
  • Palliative care

ASJC Scopus subject areas

  • General Nursing
  • Clinical Psychology
  • Psychiatry and Mental health

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